To kick off Lymphedema Awareness Month, we shared the exciting news about the launch of our new organization, the Lymphedema Education & Awareness Project! In case you missed that announcement, those details are repeated below. As we wrap up Lymphedema Awareness Month, we wanted to tell you about an easy way you can support our work.
If you are a Facebook user and are about to complete another trip around the sun, we hope you will consider choosing the Lymphedema Education & Awareness Project (LEAP) for your birthday fundraiser! These easy-to-follow instructions will walk you through the set-up, which only takes a couple of minutes and can be done up to one month before your birthday. And don’t forget to like and follow the LEAP Facebook page.
Just as the name implies, the Lymphedema Education & Awareness Project will focus specifically on raising awareness and increasing education about lymphedema, and will work hand-in-hand with the Lymphedema Advocacy Group, which will continue to lead all advocacy and policy initiatives.
Many patient organizations have similar setups. Take, for example, the American Cancer Society and the American Cancer Society Cancer Action Network. Or in the rare disease space, the National Organization for Rare Disorders and the Rare Action Network.
The American Cancer Society and National Organization for Rare Disorders, like the Lymphedema Education & Awareness Project, are 501(c)(3) nonprofits focused on education, awareness, and patient support, and are eligible for grant funding. But, like any 501(c)(3) nonprofit, they are restricted to spending a maximum of 5% of their budgets on lobbying-related activities.
The American Cancer Society Cancer Action Network and the Rare Action Network, like the Lymphedema Advocacy Group, are 501(c)(4) nonprofits focused on influencing healthcare policies and related legislation, and are not eligible for grant funding. However, as a 501(c)(4), they are not restricted in what percentage of their budgets can be spent on lobbying-related activities.
Now that the Lymphedema Treatment Act is passed and is in effect, our priorities have expanded. There are still policy changes and improvements that need to be made, and the Lymphedema Advocacy Group will continue to lead those initiatives. Meanwhile, the Lymphedema Education & Awareness Project will focus on making sure that patients know about and can access the care and coverage that is already available to them.
Because we are one community working together, communications about the work, progress, and opportunities to get involved with either group will continue to be sent out by the Lymphedema Advocacy Group, through this mailing list, so there is nothing more you need to do to stay informed about this exciting development.
With your help, the Lymphedema Advocacy Group and the Lymphedema Education & Awareness Project (LEAP) will continue to lead the way in improving lymphedema care in the United States!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaAdvocacyGroup.org
